Seeing the Child before the Special Need

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Written by Diana A. on 09 Mar 2011

In 2006 we began our adoption journey. We had one biological son and desired to add another child through adoption. We felt strongly about adopting a waiting child but didn’t feel capable of adopting a child with significant needs. We fell in love with a little boy that we saw photolisted but were nervous because he had a family history of thalassemia. We didn’t know anything about this medical need but did our homework, had his file reviewed by doctors, and prayerfully considered the adoption of this little boy. The doctors felt confident that he did not have the disease so we decided to move forward with the adoption and we brought home our son from Thailand in 2007. Three years later, he is a healthy, beautiful child and no one would ever guess that he was originally a special needs referral.

A year later we were ready to begin a second adoption. Again, we decided that we wanted to adopt a waiting child. With some parenting experience under our belts, we felt more confident in our ability to parent a child with more involved needs. I frequented various waiting child websites, "just out of curiosity", and one day stumbled across the profile of a little girl. There was not photo available; I didn’t even know what country she was from. But there was something in her profile that stayed with me and I couldn't get her out of my head as I looked over the profiles of a hundred other children. There was one blaring word on her profile: Thalassemia. Not "possible thalassemia" or "family history of thalassemia" but full-blown, blood transfusion dependent thalassemia.

Now I understood. If that word had not been on my son's file, I wouldn’t have known what it was. I would have passed right over her profile because it would have sounded too scary. Instead I had had time to understand the disease. We had been prepared to meet our son's needs if he had inherited the disease and the idea of adopting a child with this special need was not as frightening. I showed the profile to my husband and we discussed what this special need would mean for our family. After several days of discussion, it was finally agreed that I would call the agency and just ask some questions. As the director of the program described this child to me in detail, telling me about her relinquishment, her family history, her life at the orphanage and relationship with the nannies, I knew in my heart that we had found our daughter. I requested to review her file but I knew it would take something pretty drastic for us to decide to not move forward.

When I got off the phone, my husband was eagerly waiting for any information I gathered and the first thing I said was, "How do you feel about going to India?" A week later we sat down with our social worker to review the file before we went it to doctors. We saw her picture for the first time and saw this beautiful, tiny girl with the biggest, blackest eyes we had ever seen. It took nearly a year to travel to India to meet our daughter. During that time, I would lie if I said I never got cold feet. I would wake up in the middle of the night, worrying that we had made a terrible mistake, that we were destroying the happy and stable life that we currently enjoyed. Towards the end of our wait I had an internal count-down marking the days until our lives would change forever.

Her first months home were not a fairy tale. It's hard to foster attachment when you're taking your child to multiple medical appointments with painful procedures. At the time we lived in an area where thalassemia was virtually unknown. Most doctors we saw had never actually treated anyone with the disease. I felt a little like we were a circus freak show. When she was with us for a month, she contracted a respiratory illness that resulted in hospitalization. The hospital staff was very curious about thalassemia and I spent a good part of that hospital stay educating medical professionals. Often the response was the dreaded, "It's so wonderful that you could save this child", or "So you KNEW she had this when you adopted her??" I was prepared for those kinds of comments. What I was not prepared for was the comment of one nurse. She flatly stated, "You know that no one will ever treat her as if she is normal. She will always be babied and people will feel sorry for her." I was dumbfounded. And angry. But as upset as I was in that moment, today I'm grateful for that interaction. It has given me focus as I parent this little girl. I want her life to be full. I want her to experience all that life has to offer and to have high expectations for herself. This blood disorder is part of who she is but it does not define her.

Today my daughter is amazing. She is a feisty, ornery 3-year-old that loves to run, play and wrestle with her older brothers. She has a boisterous giggle that is catching to everyone around her. Someone once told me, "I just feel so happy when I watch her." And it’s true. She is sunshine in the human form and brings joy to everyone she meets. As I look back, it's hard to imagine that we once were nervous about adding this child to our family. When I look at her, I don't see thalassemia and most of the time we don't even think about it. We go to the hospital every 4 weeks for a transfusion. It's not always an easy process and it breaks my heart when she fights the nurses as they try to insert her IV. She takes daily medication that is sometimes a struggle to get down and she goes to the doctor more than my other children. We have more medical bills than most families. But what she has added to our family has made it all worth it. My boys have an understanding about special needs that is greater than many adults I know. They understand that all people are different, that some people have needs you can see but some don't, and that all people have value. They understand that we are on this earth to take care of each other but certainly do not see their sister as a charity case. Her needs are not a burden, just a fact of life.

I think everyone has heard the stories about people who adopt a child with special needs and once the child comes home the special need has been resolved or the child is actually healthy. I have one child like that. And I have one child with a special need that is considered very scary to many adopting parents. Medically, she is exactly as she was described in her referral paperwork. In real life, she is so much more. She has a personality and a soul and at the end of the day, this is so much more significant than any medical diagnosis. That is what makes her such an important part of our family and when we think of our little girl, that is what we see. In adoption, sometimes we get so wrapped up in trying to find the "perfect" child, filling out paperwork to find the right age, the right gender, the right special needs. It's easy to forget that we're talking about children and not just a file. Yes, we need to make sure that we can meet the child's needs and that the child will fit into the family, but I have learned that sometimes if we step outside our comfort zone great things can happen. This is not the family that I imagined as a child. It's so much better and everyday I'm grateful for the blessing of these children.

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